Why research matters
We are all busy at the Kartini Clinic, from the front office folks who answer calls, take messages, deal with upset or even irate parents, to the business and management folks who definitely deal with scared, upset and irate parents and uncooperative insurance companies, to the doctors, the therapists, the therapist assistants ….. busy, busy. The core of all our work is taking care of kids. Then after a long day of taking care of kids, we try and balance this with our private lives. Nearly everyone at the Clinic has gone through some considerable schooling to be able to do what they do, some have even had interminable stretches of school. Most were glad to be done and get on with purposeful work. Leave homework behind. Read a novel instead of a textbook. Go for a walk in the woods instead of attending a class. They are clinicians or run a clinic, not academicians, why should they be involved in research?
From the parents of our patients I have had a mixed response to the idea of their clinic doing research. Some agree to participate, some refuse. I have had parents eager for more information, who see research done by anyone on their child’s condition as positive and those who are suspicious of what they see as “experimentation”. Some parents respond to the idea of research with “I would like to help children everywhere with his disorder”, but I have also had a handful of parents who say; “How will this benefit my child? This may sound callous, Doctor, but I don’t really care about other children at this point, I just want to do what’s best for my own child.”
So now here come people to the clinic from afar, from Norway and London who would like to spur us on to do research, “collaborative international” research. We are excited, but a little fearful. Why should we add this to our over-burdened daily schedule? Where the heck are we going to put them (visiting researchers) in our office which barely houses us all? How will this be funded? Are we smart enough to be involved in research? Will this detract from our main mission (taking care of kids)?
What is the point of research in a clinic like ours?
Well, there are several points:
1. At the Kartini Clinic we are the caretakers, owners, trustees of one of the largest (completely untapped) data bases in the world with information on children and teens with eating disorders, mostly anorexia nervosa. From the first day, because of my inflexible belief that there is a biological, a neurobiological, basis for anorexia nervosa of childhood, we have been collecting physical data that few others did: temperature, heart rate, blood pressure, urine parameters, a zillion weights done at close intervals, estradiol, testosterone, bone density. And we have accidentally collected a lot of demographic data: date and place of birth. Because I am a pediatrician, not a psychiatrist, our histories always included things pediatricians are taught to collect: birth history, birth weight, pregnancy history, developmental history. And because I have been very concerned that we capture any family incidence (genetics!) and identify other affected family members, I have insisted that our family therapists plow through reams of seemingly unrelated family histories. We have around 1300 patient charts, of which perhaps 900 were diagnosed with anorexia nervosa and its childhood variants. That is an astonishing number of children……. and that’s the past! We march on.
2. Sub-specialized practice of any kind runs a high risk of burn-out and intellectual suffocation. When you see the same thing day after day and deal with the same problems, day after day, be it in the hospital, DTU or outpatient setting, you begin to feel as if you had “seen it all”. I know you therapists reading this know what I mean. We have had former colleagues who left ” to do something else” (though that’s not exactly how it usually turns out!); I have had several doctors ask me “how can you stand to deal with the same issues, the same pathology every day for your whole career? Don’t you miss pneumonia? Encephalitis? Kidney disease?”—-well, sometimes I do. But reading research, thinking about it, designing it and discussing it with our international colleagues has been what has kept me intellectually alive through this professional career of “everyone having pretty much the same symptoms”. Research keeps the brain alive. It is an important antidote to burn-out. Those who see patients very day and have “burned out on eating disorders” were almost never involved in research in a meaningful way. They never had the joy of international confirmation and affirmation for our work here. They felt themselves to be “on the verge of a…” rather than “on the cutting edge”. If you want to keep going, stay on the cutting edge, whether you are a doctor, a therapist, a business person or an office assistant: at the Kartini Clinic we are all involved in something larger than earning a living, something even larger than caring for individual patients. Even if your only personal involvement is reading the research, do it, and see how it makes you feel about what you do each day and what you see and hear. For parents, reading the research can make them feel less helpless, less at the mercy of the often impersonal medical “machine” that is modern technological medical care. Many have significant financial anxiety, trying to pay for medical care for a chronic condition in our country where there is little help. Feeling good about how up-to-date their child’s provider is, and feeling free to ask informed questions, can make them feel less frightened. I refer parents to the same source I refer young doctors, on the web: www.nlm.nih.gov (click on pubmed and type in your keywords of interest). This will bring up abstracts or summaries of all the published research in the world.
3. And then there is the jet fuel that propels all research: finding out the answer(s). Someone, somewhere (more likely several someones) is going to finally find out why. Why do some children suffer from anorexia nervosa? Why does it run in some families and not others? And how? How is it turned on? How is it sustained? How can we turn it off? Possibly some genius researcher from a famous lab will answer these questions…possibly…. But possibly the answers will come from a more humble corner, from a place like ours, where we may not be science geniuses, but we do see a lot of kids. And this is why research matters.
